Long-time ISNA friend and supporter Dr. William G. Reiner recently published a groundbreaking article with Dr. John P. Gearhart that gives further evidentiary support to ISNA’s mission. The article, “Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth” was published in the prestigious New England Journal of Medicine (vol. 350, Jan. 22, 2004). They described a long-term follow-up study of a group of 16 chromosomally male (XY) individuals born with cloacal exstrophy. This is a rare birth defect affecting 1 in 400,000 live births—slightly more common in males then females. It is an anatomical defect beginning early in embryonic development and the most severe manifestation in the spectrum of exstrophy-epispadias (congenital anomalies of the bladder, genitals, and pelvis). The abdomen is not closed, thus exposing the gastrointestinal tract and urinary bladder. Frequently the intestine is shortened and malformed with the bladder. The anus may also not be open. In females, the clitoris may be split and there can be two vaginal openings. In males, the penis is short and flat, split in two, or entirely absent. It is frequently associated with abnormal kidney and spinal development (spina bifida, scoliosis, meningocele). The cause is unknown and there is no known means of prevention.

The medical profession has traditionally viewed an intersex birth as a "social emergency," pushing to assign a child's sex immediately and perform corrective surgery as soon as possible, says Celia Kaye, a professor of pediatrics at the University of Texas Health Science Center at San Antonio. Doctors want to avoid traumatizing parents and help the child grow up normally, without confusion or ridicule, she says.

"Unless they're born in Texas," notes Slate journalist Claudia Kolker, "the great majority of ambiguous-looking babies will still be 'normalized' with radical, irrevocable surgery in their first year of life. But the anecdotal and scientific evidence is making it increasingly clear that this approach, which once seemed obvious, is not in every child's best interest."

“Not telling people about your condition is more difficult than having the condition itself.”

“We appeared on tv as a kind of protest against doctors who are still saying that no one should talk about this. We showed them that we can tell 900,000 people about it, and nothing bad happened to us. In fact, we had nothing but positive reactions.”

"There are times when I wish I didn’t know so much. And I realize that what I know, I learned too late. Reclaiming a childhood of medicalization can be challenging at best, but key to my survival. The challenge is not that I was born with atypical reproductive anatomy – but the power of others to question and correct my natural anatomy." Read The Self I Will Never Know, by ISNA board member Esther Morris, in The New Internationalist V. 364 Jan/Feb 2004.

In her early 30s, Betsy Driver learned why she had never felt totally comfortable in her high school locker room.

When she four months old, Driver’s doctors removed her entire clitoris because it was unusually large for a baby girl, and, following doctor’s orders, her mother never told her. As a teenager, Driver never fully developed breasts and had to undergo a second surgery to reconstruct a vagina that was never there in the first place …

Today, almost a decade after the Intersex Society of North America was founded, many people still misunderstand what criticisms the intersex patient advocacy movement makes of standard practice, and what reforms we are asking for. I’m pleased to have this opportunity to provide a summary of our recommendations for patient-centered care, and to contrast them with the current state of medical practice.